special needs
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A Special afternoon and Evening!

if a picture says a 1000 words… this is speechless!

I remember…

Have you ever felt that God has been watching you?

I know you all are thinking doesn’t God watch everyone? And I believe the answer to that is “yes.” However I truly feel like God has been watching me since I was a child…

I remember when I was in sixth grade it was the “big year” of middle school, lockers, gym uniforms (uh remember those?) and new friends…

I remember turning the hall for the first time and seeing “them”…

For the first time in my life, I saw an entire class of special needs children. A whole class! I was so intrigued by them. Who were they? Where did they come from? Where have they been for the last 6 years? How come I never saw them in my school before?

I pondered these questions each time I saw them…

Who are their families? How come I didn’t ever know them?

I remember seeing them walk in the halls together; eating lunch together and I just sat and wondered…

I remember seeing many of my peers ignore them…

Laugh at them…

Point at them…

Make fun of them….

And it just upset me….

And I used to wonder, why? Why did this bother me so much? They weren’t related to me… I wasn’t one of them…

But for years and years I wondered about them and their challenges… Why were they born like that? What is going to happen to them?

I wasn’t really a curious child about to much but for some reason this just seemed to strike a chord with me…

Back then we didn’t have programs where the disabled population was included with the regular children, and I remember wishing that there was… I wanted to know these children; I wanted to be their friend…

I was always nice and said “hello” as I passed them in the hall as my peers looked the other way pretending they were invisible.

It just bothered me…

After middle school I never saw “that class” again, that group of special needs children again and I wondered; where did they go? What were they doing?

And then “life” as it has its way of doing kept moving on and I stopped thinking about the special needs population and I graduated from high school and college…

Step in about 17 years…. November 1992….

Shelley, your daughter has Cerebral Palsy.”

I will never forget that day… I will never forget those words… And then I remembered all those children and how I wondered each day…

And then I knew why God was watching me… God choose me… to care for this beautiful little girl whose life would be much like those children I wondered about each day…

A family that walks the walk…

Our family firmly believes in giving back… I can get out my soap box and give you several reasons to support causes that come near and dear to your heart as I am sure there is “something” that has touched your life by now, or believe me there will be…

But I have always believed in helping others, as a small child I can remember wanting to host a Ronald McDonald Carnival in my backyard for McDonald’s Charities. This predates the Ronald McDonald House which ironically later became my daughter and my sororities’ philanthropy of which my daughter was Philanthropy Chairperson. Also in my younger years I thought about opening a camp for children with special needs only to become a mother of a child with cerebral palsy. As the course of life would have it I went on to found a nonprofit organization to create fully inclusive playgrounds.

I do believe that some of this crazy world is set out for us. There is too much that has happened in my life to believe otherwise…

So to help other families of children with seizure disorders our family thought it would be fun to walk together in the National Epilepsy Walk to honor Hadley and others like her.

hadley got her shirtHadley loving her shirt

hadley startingAt the starting point

group finishTeam Hadley, family and friends at the finish line 2 hours or so later

finish line with miss kimOur family and Hadley’s ever loving teacher at the finish line, Cheers!

It was a wonderful spring morning and great family way to honor her spirit!

Miss Congeniality or as we call her Hadley!

hadley does broadway

Hadley “does” Broadway, seen here with casts from Sister Act, The Adams Family, and Godspell

Miss Congeniality is a title when heard most people think of Sandra Bullock from the movie, or I often think of my oldest daughter Sarah who has won that title a number of times, but today and most day’s I think I’d have to give the crown to my younger daughter Hadley.

I have never met ANYONE like Hadley! Once people get past her first name and the “unusualness” of it; well 20 years ago it as quite unusual, Hailey, Yes, lots of those but Hadley nope just one special little lady! As I was saying… once you get past her fist name upon her introduction “My name is Hadley!” One cannot fall in love with her contagious smile and zest for life! Hadley who is developmentally delayed which was caused by her cerebral palsy has a true love for ALL people, no matter what their status is on this earth, Hadley will love you and make you smile. A true joie de la vie!

I have seen her wave her invisible wand work and touch people who  have been forgotten about; like the homeless, smile… I have seen her touch the lives of children to celebrities and it never ceases to amaze me how her gift of “a smile” can make anyone’s day a little brighter. God bless our little vessel! Our ambassador of Good Will and Cheer!

Fine Motor Holiday gifts

gifts for children with special needs

As a mom of a special needs daughter I have been through many holiday and birthdays where friends and family ask, “What do we get Hadley?” It is a bit harder and takes some thought behind finding toys that are appropriate for special needs children since there is such a wide range of disabilities. However it is doable and I’ll be giving my recommendations as a mom of a child who has cerebral palsy with developmental disabilities.

For years Hadley has worked with Physical Therapists and Conductors on Gross Motor, Occupational Therapists on Fine Motor, Speech Therapists on speech and language, Special educators on cognitive growth and therapy. So I have seen a LOT of toys come in and out of our home as well as therapists offices. The one thing that I will tell you is don’t worry about what “age” the toy says it is appropriate for because all children develop at different rates. You should rather be wondering what play value will they be getting from the toy. We have toys in our home that Hadley loves that are for very young children but have such great music elements on them which she loves, we keep them!

1.    Vtech light up alphabet apple:

Learn everything from letters to telling time with the Alphabet Apple! This learning apple features a clock with movable arms to encourage basic time telling skills, fun, letter-specific animal graphics on each of the 26 letter buttons, and a Music Mode with 26 melodies to explore. The Alphabet Apple also includes an interactive learning board with easy carrying handle, as well as fun light-up buttons to provide helpful hints and unique reward sequences.

2.    Melissa & Doug Shape Sequence Board:

The shape sequence board will help your child recognize color, shape and size, and begin sorting objects into groups. These skills are the “building blocks” of beginning math skills. What better way to explore these important concepts than with boldly colored wooden blocks and frame!

3.    LeapPad Explorer:

With everyone around our home getting new iPhone Hadley has gotten numerous old phones which she loves to “play” with. I noticed that LeapFrog introduced its LeapPad Explorer, which is designed to look and work like an iPad or other tablet device and offers kids an age-appropriate and educational tablet experience.

The LeapPad Explorer features a built-in camera/video recorder, a built-in microphone, and a library of more than 100 learning game cartridges, books, apps, and videos. Just like our tablets, Hadley would be able to touch the LeapPad’s five-inch screen with her finger or tap it with the stylus.

I like this because games auto adjust so kids can learn at their pace. Each LeapPad book app is actually three books in one, offering each story at three different reading levels. LeapPad remembers a child’s progress from game to game and book to book to keep the content challenging and engaging. Content includes everything from phonics skills, mathematics, and spelling to geography, world languages, music, creativity, science, and life skills. Kids can also practice their writing skills with step-by-step guidance and a child-sized stylus.

With the reading apps, kids can touch the words to hear them sounded out and open a visual dictionary. With the microphone, kids can record their own narration. These apps feature animation and motion-based activities with popular characters, such as Lightning McQueen and Cinderella.

And to boot you can easily and instantly share your children’s masterpieces with family and friends via email or Facebook. I’m thinking how much Hadley would love this!

4.    Art-Time with Crayola:

Crayola has some great products that Hadley loves to create with! Crayola Twistables®  Crayons and Colored Pencils:

Twist-to-advance crayons and colored pencils are easy to grip and less likely to break, particularly if squeezed in immature, tight-fist grasps. No sharpening or label peeling is necessary. These unique crayons and pencils stay the same length as they are used, which gives physically challenged users more motor control and surface area to grasp. Vary the drawing pressure on a Twistables crayon or colored pencil by pressing firmly or lightly to create a deeper or lighter color. Or here is another idea, tape two or three Twistables crayons or colored pencils together to create a multiple-point drawing tool to make stripes, plaids, or multiple lines.

Another cool product to discover is Crayola’s Erasables. Now it’s easy to make changes and corrections when drawing and writing in color. Each Crayola crayon and colored pencil is tipped with its own eraser. With erasables, all ages of people with special needs can get the results they want and enjoy the control that erasing mistakes provides.

And last Hadley loves Anti-Roll® and triangular crayons. These products are designed to stay in place. Triangular crayons guide fingers toward a writing grip. Both types of crayons are perfect for assuring that drawing materials remain close at hand

5.    Play-doh:

Another fun craft idea that Hadley has spent many hours with is play-doh. We have made everything from balls to pies and I love that not only is it good for fine motor but also for the imagination.

 

Welcome to Holland

sarah and hadley

I have often used this short story when speaking about the importance of play for all children, so for those of you who I have not had the honor of sharing this with, although the words are not my own, the sentiments sure are; “Welcome to Holland”.

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

©1987 by Emily Perl Kingsley. All rights reserved

There is a time to be proud

 

sarah and hadley collage

My girls…

One who is special with a heart of gold…

One with special needs who will make your heart melt…

One who goes into things with an open heart…

One who tries with all of her heart…

One who trained to run her first 5K…

One who works hard just to walk everyday…

One who wants all that the world has to offer…

One who is happy with a hug and a kiss…

No matter what…

There isn’t a day…

When I am not proud of both of my girls!

The first time

 

hadley first wheelchair 1997There are certain moments in a mother’s life that you will always remember, their first word, their first step, the first time they actually made it to the potty, their first date, their first kiss, their first “A”, the first team they “made” their first best friend, their first college acceptance letter… and in my case

The first wheel chair…

Hadley had been 5 years old and I had been carting her around in a stroller since birth, she was small, and it was easy to flip it open and put her in it, it was safe, she was happy… and I didn’t have to “think” about the inevitable…

And then the day came…

I knew it was coming… I couldn’t keep her in a stroller forever…

Although she was a small little girl I knew it was “time”…

No matter how easy a stroller was for me to throw in the back of my Volvo…

It was time…

And so we had her measured…

Even had her name monogrammed on it in purple… with purple sides… for our little girl…

Our little girl whose legs would never support her for long…

Our little girl whose legs get tired step after step…

Our little girl who just couldn’t stand on her own…

It was time…

When we put her in the wheelchair for the first time…

She was happy…

She tried to move it with her right hand and went in circles…

She smiled…

Me… not so much…

But I knew…

It was time…

Ignorance is bliss…

bird looking away from others
photo credit: The Dream Sky

“abortions are good is surprisingly absent from her list.”

Was the statement that stunned me as I sat and stared at my Reddit.com comments.

OK, I understand the whole freedom of speech thing but come on this was a post where I as a special needs mother poured my heart out with 10 things that this has taught me

If you read my blog you know that my daughter suffered a bilateral grade two hemorrhage on her 10th day of “life”. I didn’t know that the medical community could perform an “abortion” after a baby had already been born…

An abortion… because I wrote I was a special needs mom…

Come on now… talk about lack of sensitivity and understanding…

Funny enough, when I look back I see that the number 1 thing, right at the pinnacle, of 10 things being a special needs mother has taught me is; “ignorance is bliss” Serendipity? I think not…

Some kids dream about flying while other kids just dream about playing at a park

 

sarah and hadley Some say “necessity is the mother of all inventions,” that became evident to me one spring day in early 1996 when I brought my then 4 year old and 7 year old daughters to play at a local park. We were very excited to finally get out of the house from the winter doldrums and get some fresh air at the playground. My older daughter was thrilled to have a place to run around and I was just thrilled to get outside after winter.

When we got to the playground it was the usual ritual of letting my older daughter out of the car and having her bolt like lightening to the playground area, and for me, not so fast. I had to lift the wheelchair out of the back of the station wagon and then put my 4 year old daughter into it. When that 5 minute ordeal was over, we were off but almost immediately we were stopped by a timber barricade which seemed to be placed there to keep in mulch but very obviously was a problem for us. So, as usual supermom that I am, picked up both the wheelchair and my daughter over the timbers and then thought we were off. But again, not so easy to push a wheelchair over mulch, think of trying to drive over sand; it’s not so easy, is it?

We then caught up with my older daughter who was running from each piece of equipment to the next. When I finally told her to “hold up.” She exclaimed she wanted us to “come up” on the equipment. Come up? Now how exactly was that supposed to happen? Oh, I know the wheelchair was supposed to sprout wings. Well, that is what it would have taken to get her up on the equipment. And let’s say that actually could have happened, then what? Sit up there and watch from the tower while her sister ran around and around. This was no fun!

So my younger daughter and I went over to a seating area where I sat and we both watched my older daughter run around. At one point my older daughter came over to us a little frustrated but then realized when she came over to us that my younger daughter had a tear dripping down her face. That was it! That was the moment I went from a stay at home mom to a mom on a mission! Why was there not anything my children could do together? Why was there not anything I could do with my younger daughter while my older daughter played? This was going to change, it had to!

I went home and started drawing (coming from a design background, drawing was second nature to me) and visualizing what a perfect playground would look like. When my husband came home I told him about that days adventures and how I was now out to change the world. I had a dream; a goal- “to build a unique park where all children could play together with or without disabilities.” A park where through playing, the concepts would help all children socially, and cognitively, as well as physically. Equally as important, a place for children with disabilities to play with their own siblings and peers.

The ideas and visions of this playground resulted in the development of a theme-play park. Often a playground is considered strictly physical. Although, when the physical play is mastered, the appeal of the playground can lead to boredom. Theme-play offers a challenge to the child’s imagination and encourages children to play for extended periods of time.

My dream playground encompassed a Transportation Area, Pirate Ship, Frontier Village, Castle, Dinosaurs, and Main Street themes. In the design, accessibility was ensured through the implementation of the ADA requirements, CPSC and ASTM guidelines; those are playground rules.

By combining all of these elements in the design and equipment, my dream would create the best playground for all children to play!

That was the day I put on my “big girl pants” and “hard hat” and formed a non profit organization which would come to be known through out the country as Hadley’s Park. In 1999 after three years of lobbying and fundraising I raised the needed one million dollars to build my dream park which has gained much national recognition for its creativity and play-ability for ALL children.

Do you have any “fully” inclusive playgrounds near you? I’d love to hear about them!

Join me in my families journey and subscribe to I’m Still Standing to keep updated! I’m here to now share with you how you can build on your dreams of building a project like Hadley’s Park.